“I have already had fibromyalgia since end the 80’s (I become 54 years late August) and our son of 18 has the disease to. His life is completely ruined. He can only be active for maximum 4 hours per day. We try to stay positive but it is not easy, to be honest. Lately I have a lot of pain and am really very tired. It seems like I get more problems year after year. The son and I do our best to stay upright, though it is not always simple. But I do not have to tell this to you because you will have already heard that very often. We hope in any case that the Belgian doctors eyes will open up soon. We hope they will read and follow up your articles, because most physicians, including psychiatrists, let us still stand out in the cold. Our hope is upon you and colleagues now and that keeps us going.”
“I had recently read several articles about you and other associates discovering that fibromyalgia is as real as the air we breathe. I have had this life draining disease for many, many years, only to have lab tests come back to reveal there was nothing wrong with me. I am and always have been one who NEVER admitted to defeat, but this ailment had taken away so many things in my life that I used to enjoy, up until it finally got me bed-ridden. It’s a very nasty disease that isn’t fatal by itself, but from the intensity of the constant pain, day in – day out, it’s very draining. I had a friend and a client whom committed suicide simply because they couldn’t take it any longer. So this is a killer if one becomes so wrapped up in the dark hopeless world it holds you to. With your new discovery, I am a little hopeful that perhaps someday there will be better treatment than pain medication that has me prisoner on top of it all. Perhaps even a cure. Wishful, because I read that it may be inheritable, having two children, it makes me ill to think about it. I congratulate you and your team for this effort, and it’s said from the heart.”
“I can’t believe your article I just read !!!! I have had fibromyalgia for the last 12 years. I have been on everything from vicodan, percoset, opana, fetenol patches and now on seboxone. For 11 years, I was on a hamster wheel for pain meds. Finally I said ENOUGH ! They were not working anyway. I left 20 years of employment, to move to Florida, thinking the pain would get better; besides leaving a stressful life, I lived in Rhode Island. Seven years later; I am back in RI….the warm weather did nothing and was told the barometric pressure does worsen FM. I have been out of work since 2008; waiting for disability; they denied me twice and now in Appeals Court. I am destitute; I have used all my money I ever had; took out my pension; and lived on that for the last 2 years….and now live with my daughter and son-in-law ! This disease really did a number on my life !!!!! I have nothing and had it all at one time. All I want is to be able to live like everyone I see live a normal life and find some kind of happiness.
It is funny you say hands and feet…This is where most of my pain is. Nerve ending in my feet keep me from doing anything. Like walking !!! I told my pain management physician in Florida, that when I went to the beach and in the water; I was ‘slapping the water with my hands” not thinking anything of it….I was on all the opiates I had said above by this Doctor; feeling no pain…..I woke up at 3 am in the morning; screaming !!! “My Hands, My Hands.” They felt like they were blown up and swollen; but they were not !!! I couldn’t move them. My feet from walking feel like they are gong to come out of my skin. My analogy of Fibromyalgia; Have you ever cooked a hot dog in a microwave for too long ? When it burst threw the skin of the hot dog…..This is how I feel with fibromyalgia. People say, “keep moving.” Moving makes me more incapacitated !!!! I use to play tennis, jump horses, was on a swim team, dance in the arts for 14 years, ballet, and now I can’t walk my dog !!!!
All the Lyrica, Cymbalta, and Sevella; I had all reactions to and got very depressed. I am on 20 mg of Lexapro now. I did the holistic route, works for so long and then like everything else stops ! I am now 55 years old, and feel like 90 ! I hope you have questions for me and maybe some answers. I will be going to court soon for my disability and I will be taking your article to the judge. Thank you so much, for research that proves that Fibromyalgia is REAL !!!”
“Your article possibly saved my sanity! ‘Fibromyalgia Is Not All In Your Head, New Research Confirms’ was very inspiring. Although I had all these symptoms for so long I really didn’t believe this was a true disease even when I was told that all my symptoms were most likely Fibromyalgia. I was embarrassed to say that was the diagnosis. There was no real ‘test’ for it and all the tests I did go through didn’t show concrete causes like neurological or an auto immune disease. As a last resort in finding a cause for the pain and my last chance to try to help myself, (I also suffer from double depression), I investigated this a little further recently and I found your article. I had to quit school a semester short of my degree in dental hygiene which requires a lot of dexterity, have been unemployed, with a mountain of school loans. I truly felt like I was weak and a loser and maybe this was it. I hope y’all can put this out there so that other doctors will believe too. I’ll do my best to pass it along. I now have some real hope for real relief.”
“I just want to express my appreciation for the work you and your team are doing to find a cause for Fibromyalgia. I have had Fibro at least since my early thirties and possibly from childhood. I am now 66 years old and the disease has finally managed to ruin my life. I worked for many years at a high paying, highly stressful job. I did well and just worked through the pain, until the day came about ten years ago, when I simply could no longer function. All the years of careful planning for retirement were spent on medical needs. I cannot thank you enough for your work. It may be too late for me, but I truly believe you are on to something concerning the nerves in the feet and hands. I have been told so many times that this pain was self generated, that I had given up hope of ever being better. Now I use a cane, walker, and power chair for the times I must leave the house. Basically I stay at home except for appointment to doctors. Clothes cause enough pain, to need extra painkillers. So I stay where I can wear the least amount of constricting clothing, and watch my life pass by. Thank you again, and that you set a course to find a physical cause of Fibromyalgia symptoms. There must surely be a special place in heaven for you.
Thank you and God Bless.”
“I just wanted you to have my gratitude, and your team has it too. I am particularly grateful for the fibromyalgia research as this problem I have (among many others) has cost me almost everything I enjoyed in life. I am nobody special, I just suffer from this horrible pain disorder. I would give much to be able to enjoy the simplest things such as playing with my children. I don’t know how much more research that you have planned, but I do hope that you keep going strong! I just have to say it once more doctor: thank you sincerely from the bottom of my heart. You don’t know what this could mean for me.”
“I am not in the habit of sending emails to research labs of any kind, but after reading an article online outlining how research at INTiDYN was able to isolate a physical, measurable difference in fibromyalgia sufferers I felt compelled to write and thank you. You have no idea how much of a relief it is to be able to point to a physical abnormality that is common across sufferers of fibromyalgia. Something tangible, measurable, not merely theory or supposition makes me feel so much better. Now I feel confident when I have to tell someone that “its not all in my head”, now I have something physical I can point out to them. I know you probably aren’t use to dealing with individual sufferers of a disease or disorder. You are at the top of the ladder in research, but I wanted to take the time to thank you. Your facility and staff may be putting myself and many others afflicted with this condition on the road to real relief if not the cure. Thank you for give hope to me and many others. I am spreading the word and passing on that hope in any way I can. Though it may be old fashion “Bless You”. Bless you all.”
Ottawa Ontario Canada
“So much to you and every member of your team for your important work on fibromyalgia. It has been an absolute blessing to share this great news with my support groups, friends, family and extensive and diverse medical team. I did not hear of your discovery until a few days ago and since then have made it my mission to get the word out across Canada. If I can help in any way to further your research, as a female fibromyalgia patient or otherwise, please let me know. You have brought hope back to millions of people – thank you.”
“I am a Malaysian and was diagnosed with fibromyalgia last year. My quality of life has dropped so much with this illness. I have felt so alone at times as this disease is so new in Malaysia and many people has not heard of it. I don’t even know a single soul in this country who is suffering from this illness. Reading your recent research and discovery about the cause of fibromyalgia has given me much hope. I just want to say thank you and I hope you will continue with your research so that possible treatments would be available to treat us. Thank you once again.
“I have just forwarded your study results to a few French physicians (some specialized in neurology, rheumatology, psychology, neuro-gastro-enterology…) in hospital (such as Hop. Européen G. Pompidou, Hôtel-Dieu, Léopold Bellan, in Paris ; or Colombes in the outskirts of Paris) ; and to physiotherapists, and the like. All having patients with fibromyalgia. I also informed my friends who suffer from it. I translated into French parts of your explanations, to make the reading easier for some of them. I am glad to tell you that some French Health magazines had already published your research news. Data exist here and there, but it is a real struggle to make them known widely. It took me a year to get the diagnostic done, and two years to find out who was an expert on the pathology, over here. So many of them still do not believe in what we describe, or they think they already know what it is all about. Obviously, by not listening (strong ego, etc.), they fail to help. Some made me cry, some got disrespectful, yet I have faith in research, and encourage many friends who suffer too. I keep my fingers crossed to get soon good research and treatment news from you and team.Thanks again for your time and consideration.”
“I recently read about the results of your study on Fibromyalgia and its true pain source. I found it fascinating and encouraging. I would like to thank you immensely for the research you are conducting. During my diagnostic period, I was told numerous times that it was all in my head and everything was a physical manifestation of anxiety/depression. It is really encouraging to those of us that have these complicated neurological disorders that there is someone out there that is taking our side and proving that our pain is real and valid. Though, most importantly, that there is someone out there that is trying to find a treatment to help normalize our day to day activities and alleviate the pain.
Thank you and warm regards.”